Week Nine

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So, pediatrics is my Achilles heel. I love working with kids and even sick kids. Especially developmentally delayed kids. There is nothing more heartwarming than a hug or smile from a sweet face to light up your day. But this is also the unit where I feel absolutely like a fish out of water. This is totally not my comfort zone. The funny thing is, bring in a sick kid to my family medicine clinic and I will do fine with them. I know when to call for help and what needs attention beyond what I can offer. When I'm at the Children's Hospital, I'm not on the same wavelength as the pediatric residents. They learn an entirely different way. Children are resilient and bounce back from the brink of death more easily. They have special protocols that are not the same as what would be done for adults, they use drugs that we would not use in adults because the side effect profiles are too scary, and get illnesses adults would not get/survive.

And the practice of medicine is nowhere more evident than in pediatrics. Almost everything done is not FDA approved. There is a lot of focus on putting everything down to evidence based medicine, in order to standardize therapy. Another thing that is very interesting to me is the difference in geographic area as to who and what services people are getting. In rural areas, children are well cared for, but it makes the family doc more responsible. Many of the folks don't get in to town to the big city very often and when the kiddo is sick enough to need it, they are often hours from home and support system. The Children's Hospital becomes their home and there are varying degrees of success in accommodating everyone's needs.

So here is a list of congenital syndromes to look up, google pictures. It's just a few of the faces I get to love on a regular basis:

-CHARGE sequence, Tetralogy of Fallot, holoprosencephaly, Neiman-Pick, Hurler's Syndrome, Pierre Robin syndrome

One of the first things you have to decide to do when working with special children is to not be shocked or surprised. The most beautiful smile I received today came from a little one with CHARGE sequence with bilateral cleft lip and palate. The sweetest hug I got today came from a little guy who is half his expected size, and we don't know exactly why. The most intent look I got this week was from another little girl with multiple chromosomal issues, staring across the extra wide bridge of her nose. The biggest blessing I've been given is three healthy sons.

I am broken hearted by some of the crass things I hear in the work room. I guess you have to develop a way to deal with the stress, but these are little kids we're talking about. They talk about some of the "problem children" that frequent the hospital. I'm finding they are a creation of their own making. Some of the things they choose to do for children they can't figure out, just passing it on to the next specialty, just creates a sense of desperation and dependence. We need more family and child counseling and education specialists. Or we need to teach parenting/decision making early on. Several of the problem children are one of a large family of folks with serious issues (the least of their concern being medical). Many come in and expect a free ride home, free ride to follow up appointments, free diapers and formula, because no one will turn down a child. But we foster a sense of entitlement and dependence this way. I do not see what is so wrong with asking for an hour of volunteer/pay-back time, say in the Ronald McDonald house or nursery when you depend on the system for all support. It would go a long way. Some families are too busy dealing with a very sick child to do this, so it wouldn't work for all. It is a child friendly place, so your child could go with. I'm just thinking, and that is dangerous right now, I've gotten all of 8 hours of sleep in the last two days. I'm going to bed, just to be up in 7 hours to do it all over again.

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